{
  "id": 5130613,
  "title": "Neuropsychologist finds gaps between treatment and science of ALS, dementia in her own family",
  "url": "https://urgent.news/2026/09/02/neuropsychologist-finds-gaps-between-treatment-and-science-of-als",
  "topic": "health",
  "section": "Health & Medicine",
  "published": "2026-09-02T17:20:01.000Z",
  "source": {
    "name": "Medical Xpress",
    "slug": "medical-xpress",
    "url": "https://medicalxpress.com/news/2026-09-neuropsychologist-gaps-treatment-science-als.html"
  },
  "original_language": "en",
  "account": "Dr. A. Campbell Sullivan, a neuropsychologist and clinical associate professor of neurology at the Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases, has uncovered a significant gap between the treatment of neurodegenerative disorders and the rapid advancements in research. While working with patients, she noticed that the medical community was falling behind in providing adequate support and guidance to families affected by these conditions.\n\nDr. Sullivan's own family served as a stark reminder of this gap. Her aunt Grace, in her late 50s, exhibited symptoms of inherited amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD), both of which are leading causes of dementia for those under the age of 65. Despite her initial diagnosis, Grace's symptoms progressed, leading Dr. Sullivan to perform a comprehensive evaluation at the Glenn Biggs Institute.\n\nThe evaluation revealed that Grace had a genetic mutation in the TARDBP gene, causing familial ALS with FTD. Dr. Sullivan emphasizes the critical need for better systems to support individuals and families living with these genetic risks. While scientific advancements in genetics and biomarker discovery have transformed research and care, the clinical infrastructure has not kept pace.\n\nDr. Sullivan argues that these families require guidance on genetic testing, life planning, caregiver support, and options for long-term monitoring. Otherwise, they may miss crucial opportunities for informed decision-making and early intervention. The article, published in the npj Dementia journal, highlights the urgent need for a stronger clinical infrastructure to bridge the gap between scientific progress and patient care.",
  "summary": "For A. Campbell Sullivan, PsyD, this time it's personal. As a neuropsychologist and clinical associate professor of neurology at the Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases at UT Health San Antonio, she's on the front lines of groundbreaking research and patient care in frontotemporal dementia and other neurodegenerative disorders every day.",
  "key_points": [
    "Dr. A. Campbell Sullivan finds gap between treatment and ALS/dementia research.",
    "Her aunt Grace has genetic mutation causing familial ALS with FTD.",
    "Sullivan advocates for stronger clinical infrastructure to support families."
  ],
  "editors_take": null,
  "illustration": null,
  "coverage": {
    "outlets": 1,
    "also_reported_by": []
  },
  "ai_generated": true,
  "disclaimer": "Summaries, key points and the editor’s take are written by software from other outlets’ reporting and may contain errors — always check the linked original."
}